#44 Getting off the Diabetes Roller Coaster
Scott Benner
Part of the Quick Start episodes
Bethany, mom of 4-year-old T1D Will, finds the nerve to be bold with insulin after a phone call with Scott. Scott gives her some basic steps to take to stop the spikes she sees in her son's blood sugar. After a short period of time, Bethany sees success by pre-bolusing and addressing high blood sugars sooner. She shares her son's initial T1D diagnosis story, her stress over his uncontrollable blood sugar, and her path to finding answers.
Subscribe today in iTunes (if you are on your Apple phone the link will launch your podcast app. **Yes, you have a podcast app on your iOS phone, everyone does**).
A few days apart... The graph on the left is what Bethany sent to Scott when they spoke on the phone and the one on the right is from a few days after their conversation.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hey everybody I'm trying to get the episode of the podcast up at Arden is FaceTiming with her friend. So instead of me Arden's friend Joelle is going to handle this Jolla, can you please say, Episode 44 of the Juicebox Podcast is sponsored by insolate episode 44. The Juicebox Podcast. Cat cast is sponsored by insolate is sponsored by the makers of the world's only tubeless insulin pump. Makers of the world's only tubeless insulin pump only to Bush insolent. Thank you, Joe. I'll say goodbye to everybody by heart and you want to say anything? Hello this episode would be better than this. By the way I blame and you should blame to the person who does this Miranda Sings thing we for children my daughter's age believing that making that voices comedy right people's in a way we go. And on the other hand, please always remember that nothing you hear on the Juicebox Podcast is intended as advice, medical or otherwise, always consult a physician before making changes to your plans. Bethany?
Bethany 1:36
Yes. Good
Scott Benner 1:37
morning.
Bethany 1:38
Good morning.
Scott Benner 1:39
Are you Bethany or Beth?
Bethany 1:41
Usually Bethany, but I get all sorts of names. So whatever, whatever floats your boat,
Scott Benner 1:46
I'd prefer to go with the one that you enjoy.
Bethany 1:49
Afternoon is fine. Excellent. How are you this morning? I'm a little tired, but good.
Scott Benner 1:56
You are my earliest podcast ever.
Bethany 1:58
Oh, wow. Great.
Scott Benner 2:02
So we'll jump right into it. I just wanted to let you know that at some point, my wife is getting a late start today. Between heavy big shoes, a big shoes girl. And we have wood floors. So there might be a couple of minutes where I say to you, Bethany, you can go get a drink. If you want. We'll come back in a couple of minutes while Kelly clumps around.
Bethany 2:20
Oh, that's fine. I have to comping children upstairs. So yeah, I hear you will be good.
Scott Benner 2:28
Okay, so I'm kind of really excited to talk to you. And I know you're probably a little like, I don't even understand why we're doing this.
Bethany 2:36
But yeah.
Scott Benner 2:39
You've got a great story to share with people even if you don't know it. So take a second introduce yourself, kind of, you know, let people know how you're connected with diabetes. And then we're going to jump right in. Welcome to Episode 44 of the Juicebox Podcast. This episode is called Getting off the diabetes roller coaster. It's a conversation with Bethany she is a D mom whose son Will was diagnosed just one year ago, I met Bethany online when she was reaching out to the diabetes community, looking for help controlling her son's peaks and valleys with his blood sugars. And she and I ended up speaking on the phone privately. And this is the story of what happened that night on the phone and what's happened since I urge you to go back to the blog post at juicebox podcast.com to get a look at wills graphs before and after we spoke. Okay, I hope you enjoy this episode.
Bethany 3:34
My son is well. And He's four years old. He was diagnosed almost exactly a year ago. We're about four days away from D Day. So it's been a whirlwind of a year. But most of the things we started noticing were back last September and 2014. He started getting kind of wild, he goes to preschool. And the teachers there were having trouble with him just a nap time. Out and crazy. And then she would take into her office and he would try to run away and he just sort of got added. So those are never the fun phone calls to get from school especially as a teacher. It's kind of embarrassing. So
Scott Benner 4:28
this is a couple of months before you figured out the diagnosis September and he's he's really like running off away from teachers and doing all kinds of crazy stuff.
Bethany 4:37
Like the teacher would be walking from one place to the other and he would just run away and she has a whole class of kids so she couldn't follow him and he was just totally out of control.
Scott Benner 4:48
Where did that lead you first? Did you just think you had like a like you You lost the lottery on kids who behavior.
Bethany 4:57
I was hoping that my husband As is notorious for being sort of a wild child, so I was like, oh, it's his fault. You know, it's not me. It's just yeah, he's just crazy. But he hadn't been like that at all before. So something seemed a little off to me. Um, I thought maybe it was something with food, because he just had some other stomach issues. And so I thought maybe it was gluten. So we tried taking him off of that. And that helped a little bit with his stomach stuff, but it wasn't really helping his behaviors at all. So, I mean, I was just at a loss. I didn't really know what I tried different things. We tried rewards, you know, okay, if you take your nap today, you'll get to watch a show tonight. You know, little things like that. Um, but it was it was so unlike him that I knew something was, but you know, he was three. I was like, Well, maybe it's just his. Yeah, sure. Toddler phase and just get through it.
Scott Benner 6:00
And right, it feels like it doesn't feel in any way. Like it's something odd and right. And you have another kids, right?
Bethany 6:07
I do. Well, we have another son just turned two. So he was like a baby at the time on the radio. Okay. Yeah. So he, we actually on my younger son's first birthday, then he his birthday is the end of November. So he just turned two. On his first birthday, I feel like was sort of the trigger point where his body finally was like, okay, my pancreas is just done. And he, that's when we started seeing him drinking a lot. And at school, when he was taking his nap, lack thereof. He would I mean, he would wake up crying and be like, I need water. I need water. And so the teachers at school, but even we're a little Oh, it's just normal, or like, in so
Scott Benner 6:56
sure. Yeah. I mean, that's not a I mean, being thirsty is a fine reaction to. But But yeah, like literally being thirsty to the point where you're crying is, right. Yeah, obviously more than that.
Bethany 7:06
And at first, I thought, again, three, it's just some bad habit seem to break it. And he started wedding through his diapers at night, which, I mean, I would put him in a diaper. And two hours later, I would have to change it. And we're washing his sheets every night. It was a pain. So of course, it's right before Thanksgiving. So we went to my in laws for Thanksgiving. And every night, we had to wash his sleeping bag because he would wet through and he didn't. That was really the main symptom we noticed was just the excessive drinking and wetting out his diaper.
Scott Benner 7:43
And did that seem to correlate with something to was there? Because I know for me, that it was a change over like art and switch from bottles to just drinking, you know, from a regular cup. And I just thought she was drinking more because of the big change. But yeah, I
Bethany 7:59
don't think so I didn't notice. I mean, we didn't really change much. As far as that goes it. It was just sort of out of the blue. So I didn't necessarily think it was something like that. I just thought it was just a bad habit he was going through. And so when we were up there for Thanksgiving. I see no, of course, I'm googling everything. Oh, excessive thirst. What is this? You know? So everything kept coming up saying type one like, well, it's not that because we're healthy. And no one has that in my family. And I know it can't be that. And when we got home, I'm sort of the type that you know, I only go to the doctor if I absolutely absolutely have to. And so we kind of put it off. And on Monday when we got home I finally was I told my husband, we probably should just call and get him checked and see what's going on. So I called the doctor, and they had an appointment the next day, but it was not convenient for my schedule, which I still feel really bad about. And they had another appointment Friday. So I was like, Oh, well, this wait. So we went in and and that morning we just noticed he was just very pale and it looks skinny like his ribs. He's not a small boy. Like antic
Scott Benner 9:20
you're starting to see a change in his body. Yeah,
Bethany 9:24
yeah. And he just looked, looked sick. Did not bet at all. So I took him into the doctor. And they tested his urine and they took a blood sample. And the lady sitting there I will never forget this. She's sitting there with two fingers. She's checking it and she's looking at her sheen and she's just sitting there and sitting there and nothing's happening. And it felt so long to move. I'm sure it actually wasn't but she just kept sitting there and sitting there and nothing was happening. And I'm going what is going on? And finally, she just said, I'll be right back, and she just left. And I'm thinking, Oh, their machine is broken. You know, nothing. Nothing's wrong with my child. It's their machine. And we actually had point with the nurse practice. So he came in, and he looked very panicked and distraught. And he said it, it looks like it might be type one diabetes, his sugar so high, we can't read it on our machine, and I'm gonna go get the doctor and he just left and we're like, whoa. And I think I still at that point was sort of in denial. Just yeah, sure. Um, you know, oh, it's maybe it's just something he
Scott Benner 10:44
or I don't, it's gonna end up being something different than Right.
Bethany 10:47
Right. Again, I was like, I was just a habit. It's just some habit. He has this drinking. So I'm the doctor came in, and he was much calmer and made us feel a little better. But, you know, sent us to the hospital. It was about an hour drive, we stopped at home real quick to grab some stuff. So they told us to go straight there. But you know, I'm sort of the type that Oh, it'll be fine. We just need a couple of minutes to grab a few things. So we went down there at the hospital is like glucose was 647. Which actually isn't super high. I mean, it's high, but not that bad. Is a one C was 9.1. I think. Okay. And so it wasn't horrible. Really?
Scott Benner 11:38
Yeah, it sounds like you. You found it in the in those first couple of months,
Bethany 11:43
right. Yeah. They said it was obviously brought him in and that we caught it pretty early. So
Scott Benner 11:47
Kelly. She counted by the way, Kelly just put her makeup on. And she even she waited to come downstairs. But thank you, Kelly. She put her shoes on. She was very quiet. And she seems a little irritated. She's not what I would call a morning person. She's glaring at me now. There we go. Yeah, so So it sounds like you guys did catch it the first couple of months. Right? And and so when you leave the hospital, and it's only a year ago, it's 2014. So do you leave with the idea that there's going to be an insulin pump soon? Or glucose monitors? Is that something you figured out when you got out into the world? Or what did the hospital What did the hospital give you out the door?
Bethany 12:33
They gave us syringes, Humalog and Lantis. And they said we cannot get a pump for a year as we need to understand the disease and make sure we get everything. They never I don't think they ever mentioned us monitor. I don't remember hearing anything about that. They gave us the two hour spiel of here's this and this and this all right, good luck. I was like, Billy, you want me to inject my child. I don't have any education in this. I have no idea how to do this. So
Scott Benner 13:10
24 hours ago, I was the person who was like, let's stop at home and get a pair of sweatpants. And so let me let me kind of ask you this real quickly because it made me wonder when you said this it's been a year and you said prior to and I don't know how old you are. I'm sorry. Would you are you comfortable saying yeah, I'm you cut out but did you do that on purpose while you were saying your age? I'm 31 Okay, so you're 31 and and I can completely relate with you like I was prior to diabetes like I was definitely the kind of person that if I got up on a December morning and it was in any way not freezing outside if it was the weatherman was like hey, it's gonna be 50 degrees today. I would like put my kids in the car like let's go to the zoo. You know, like like throw away all my plans and just like do something else. And so are you still that person or has this changed you in any way are you trying to find a balance though?
Bethany 14:06
I think for the first month I was kind of scared to go anywhere we did it happen right around the holidays. So we did go up to my in laws for Christmas. And I had so much stuff with me because you know just in case I we went up there but we didn't do much else we were supposed to go over to Ohio to see my family but we didn't do that it was just too much and work too much. I think the thing I was most worried about honestly was other people getting sick. Okay, so I cuz the doctors sort of said his immune system is down if he gets sick, it's really bad. Yeah, I was a little scared to have him around anyone did it almost
Scott Benner 14:58
feel like a newborn like that. Yeah, like, like, let's wait till he's had diabetes for a little while he's bounced back before we, I listen every holiday, to when someone invites you to their house, it's about my third thought, I'm like, you're gonna be sick. I know they're gonna be sick. You know, so no, I completely get that.
Bethany 15:16
I think that yeah, that that's probably scared. Most but I think now things are mostly back to normal. Like, it's it's a little easier to go places but I think the people that I leave him with, um, that still makes me a little nervous. I have you noticed that number of people don't know what to do. And beyond that, I kind of feel like a prisoner because we can't do much because we can't just grab a babysitter and go
Scott Benner 15:45
Yeah, yeah, the, the well meaning 15 year old girl down the street who's gonna talk to her boyfriend on Snapchat and just make sure your house doesn't burn down doesn't work anymore. Okay, so Alright, so when did you in this past year figured out you were gonna get an insulin pump? Because it sounds like you did it on your own without the doc doctor told you a year. If you listen to the doctor, you just beginning one now. So how did you come to that idea?
Bethany 16:10
Oh, I am a teacher. I teach elementary school. And I've had several students who have gotten pumps in. I teach fifth grade. I've had two students that have gone on. So I sort of thought that's when you were supposed to get it like when you turned 10 or 11. That's when you get it. So when they said a year, I was surprised they could get him that young. Right? So right away, I was like, well, that's way better than injecting him with all these needles. Yeah, we're gonna do that. And she said a year. So that was the nurse practitioner. And after about nine months, I had an appointment with a different doctor. And I said, I would like to get on pump. And she's like, Okay, I'll sign you up for a pump class. I was like, Oh, that's easy. I just had to ask. Yeah. So I think a lot of it depended on who I met with, because I think the other lady would have been a little more hesitant. Um, I think they also saw that, okay, we understand this, like, we know what we're doing. And we don't need to wait months, nothing. We're not gonna learn anything different in the next three months that we don't already know.
Scott Benner 17:14
So isn't it funny how arbitrary some of the things we think are like, the nurse practitioner tells you a diagnosis, it takes a year as if exactly 12 months is some magic like number, right? And you being a fifth grade teacher, and only seeing kids with diabetes, when they're in fifth grade. We're like, oh, people get insulin, or they're in fifth grade. Yeah. That's what I thought. But that's But see, that's I oddly reasonable, because it's something you wouldn't really, there's no real reason to think it through unless you're living with diabetes. Like you just be like, Wow, every kid I see him getting an insulin pump is in fifth grade. It just, you know, I just think that's really funny. And it's really indicative about how a lot of decisions seem to get made with our healthcare for some reason, like, wow, the guy before me said it, you know, you know, and he, this is how they did it. So you grab a pump? Do you get the U of A, and you also have a I know you have a Dexcom CGM, because I've seen your, a few of your graphs. So did you grab them at the same time? Or is that even more recent?
Bethany 18:11
Oh, we got the Dexcom. First we got that this summer, spring, I guess may we've got the Dexcom and is a one sees sort of, we're not coming down. And I think in February, it was about 8.7. And then in May, it went back up to nine. And I mean, I knew we weren't doing something right. So we got the index. Com a friend told us about it. We didn't hear about it from the hospital or anything. She was like, This is great. She has a young daughter, who was just diagnosed about the same time. So we got that. And that was a wake up call. Um, the first time we put it on, and I saw his sugar just after he ate, it just rocketed up. And then it just like dropped way back down. When I had been doing my two hour meal check, fine. Yeah. So I had no idea this was happening between my two hour check
Scott Benner 19:10
the hour and 15 minutes in between. Right. Yeah, right. How did that I'm sorry to put you on the spot. But you're us have a specific reaction to this that I really, I appreciate. So how did that make you feel when you saw what was happening?
Bethany 19:23
It was scary. It was it stressed me out. I mean, I felt like it was totally out of control up to that point. I was like, Okay, our numbers are decent. But it it just felt like a weight on my shoulders. I couldn't I didn't know what to do with that. And it just I felt this stress all the time. Like I'm not doing good enough. His numbers are added and I don't know how to fix it.
Scott Benner 19:52
And it's funny because here's where I see two really different schools of thought sometimes and I completely under Stan both of them. So sometimes I see people say, my kid's blood sugar is all over the place, you know, there's these big spikes, but it does come back down. And then there's kind of this attitude like, well, there's not really much I can do about it. And then you see kind of the other school of thought, which is, there has to be something I can do about this. But I don't know what it is. And I need to find out. So you and I meet online, basically, what would you say about maybe five weeks ago, like right around a little more than a month, around a month, something like that. And I am, I'm going to tell this embarrassing story. I'm sitting on the sofa with my wife watching scandal. And I'm trying to pretend that I don't like scandal. That's, that's, that's how I roll right there. I'm like, This is stupid. And then I'm like, I wonder if it's in her going to sleep together again. And so. And so I try to pretend that I do admit that I'm happy that somebody seems to have told Kerry Washington to stop quivering her lip every five seconds, that does seem to make me happier. And I'm kind of bouncing back and forth on my iPad and looking at the Internet and carry slips quivering. And, and in their ICU in kind of a private parenting type one Facebook page. And you're just basically saying to people, like, look, my kid has these insane spikes, and I'm trying to figure out what to do. You seem even in writing. Beyond flustered, you seemed sad. Like, like, that's how it struck me. And people were giving you advice, and some of it was good. And some of it I was like, I don't know if that's gonna help her. And but but the way it comes in, you know, in a, let's just say this, I'm really thrilled that the internet exists, because it helps a ton of people. But I don't know if talking in a Facebook thread is the best way to figure out your medical problem. And so and so it's tough because someone comes in and says something that makes a ton of sense. But maybe they're not a completely right that this is your situation, maybe they're just spitballing and you're like, hey, try this, try that. Which also kind of doesn't help you because you have to go live your life. You can't just it's not like you can quit your job and you know, stop going food shopping and sit in the house and try everything. It's you know, you need you need a plan. I always think like you have to have some sort of a plan. So I reached out to you. And I don't know how creepy this comes off on the internet. But I was like, Look, if you're willing to give me a call, I think in like 10 minutes, we can stop these spikes from happening. And for some reason, probably out of desperation you agreed and called my house. And so I don't think we spoke more than about 10 minutes. And I tried to like oversimplify things for you and give you like a couple of basic steps to take that I thought would stop the spikes. And and I've seen I've seen graphs since then that looked like that's work so so why don't you instead of me talking? Why don't you tell me? What did i What did the man what did that creepy guy on the phone tell you? So before Bethany tells you what she and I spoke about on the phone that night and how things have gone since then. Let's have an ad, shall we? Alright, so listen, it's wintertime it's in full swing, there was just a giant storm here on the East Coast. You know, you're you want to go out you want to go skiing, you want to go sledding, you want your kids to play in the snow. Wouldn't you love to do all that without tubing. And you know without having to disconnect from a pump, or without having to you know, roll up a sleeve or pull up a jacket to give insulin at some point you want to have a central pump, you want the Omni pod to blow sense on pump. It's obvious. All right, so let's not mess around. Here's what you're getting with it on the pod. You're getting continuous insulin delivery that you don't have to disconnect from, you're getting the tubeless system, absolutely no tubing to worry about getting tangled, no visible needles to worry about insertion is virtually painless, which means your child can just go back to being a kid. Now the best way to understand on the pod is to try it for yourself. So you can get a free demo kit which includes a sample nonfunctioning pod by going to www.my omnipod.com forward slash demo, but if you want to show some love for the Juicebox Podcast, go into the show notes and click on the sponsor link there because then insolate will know you came from the Juicebox Podcast. You can do that through your player, or from juicebox podcast.com and go to this episode, click on the link from the pod and they'll know you're you're coming from here which which helps the podcast I would appreciate that. He gets a demo pod you see what you think there's absolutely no obligation now I mean honestly couldn't be simpler. Click couple of things you fill out they send you the pod. It's a demo you stick it on you see what you think. And you make a decision I come on the holidays are gone. Now it's time to stop thinking about other people started thinking about yourself again. Okay, let's get back to it and find out what Groupby Scott said to Bethany on the phone.
Bethany 24:57
I think two things that stood out to me. Or you asked if I Pre-Bolus, which I did, but I was doing it right before he ate. what had been happening before is after he ate he, oh. And I was worried that if I Pre-Bolus any more than I was that he would go even lower. It didn't make sense to me, because why would I Pre-Bolus anymore, when he's already going low after he eats right after he eats. So I, I just tried it. You said to Pre-Bolus Try if he's Oh, so try 10 or 15 minutes, if he's high by 20, or 30. And so I tried that. And it, it worked. I couldn't believe that it didn't make him go low. For some reason, it was the combination between the insulin hitting him in the carbs hitting him, I guess, right at the right time. That aid he didn't shoot up anymore, didn't drop down after he ate. And the other two things I remember you saying which were so helpful, when he was high, if it was between meals, and he was very high, said whatever you would Bolus him right now, to bring him down at one unit. And always catch it with a juice box. And I just, I remember, you know, I have this pump now. And we're the pump we started in October. So we haven't had it super long yet, you're still sort of trying to figure all the Basal rates and that out. But I didn't realize how much I I was so used to doing injections that I didn't realize how much control really I have over these numbers. So I was used to just between, you know, let's wait and see if it comes down or if it levels out, or let's wait and see what happens. But it was just sort of a switch. And I realized I can do something right now I don't have to wait two hours to see if it comes back down. And so I I did that I started some insulin, and I increased his Basal rate. The other thing I did, which I think I don't know why I didn't do this earlier, but the other thing I did was changed my high alert. I think I had it at something ridiculous. Like, I can
Scott Benner 27:30
look if you want. It was really high. It was like 325. Yeah.
Bethany 27:36
And the reason I had it so high is because around injections and it went high, there wasn't really anything I could. So I just like oh, turn that off. Let them be high, because I don't want to get these alerts all the time. And so I brought that down, I think I started at 250 than I realized, and we're not even getting close to 250 anymore. So then I brought it down to about 200. And it it just made me realize, okay, if I'm getting an alert that he's going Hi, he's starting to approach 200 or more, then we need to do something we need to give him an Bolus. And if it's the right amount, awesome if it's too much my juice, which he loves.
Scott Benner 28:18
In so yeah, so would you rather know there's a leaky pipe in your basement when there's a small puddle on the middle of the floor? Or when there's two feet of water? Exactly. Right. Right. And so, and have you I wish you could see the goofy grin I have on my face while you're talking about this, because I'm just really thrilled for you. Because it's not, it's not something it's not some big magic secret. Right? Right. Like basically, basically, I told you two things on the phone, and the big ones that stuck with you was, you know, let this insulin be working while the food is working not not before or after. Don't have you know, don't don't let the food drive your blood sugar too. And I hope I'm not embarrassing you. But I mean, he's close to 400 in some of these graphs. Oh, yeah. Right. And so, you know, so instead of the food, instantaneously driving your blood sugar to 400, and then the insulin kicking in and dropping the blood sugar back down again, why don't we and I always talk about it like that, like, let's let the carbs and the insulin kind of have that fight at a blood sugar where you'd like it to stay when the fight is over. You know, let the carbs pull up and the insulin pull down at 90, right, right. And in the reason you're not going low after that is because you don't still have active insulin going when the carbs are done. And that's where your load is coming from is still having, you know, back back before as you had insulin happening, and the food was gone. And so there was nothing to stop, you know the insulin from dropping the blood sugar really loud. So basically, I that's what I told you. And I think the other thing that I told you probably wasn't something that I said out loud, but it was probably just a few Feeling which was just, like, you know, confidence, you know, like, like just yeah, this kind of the confidence to just look at what you're looking at. Make sense of it, and then try something not just not just be like frightened all the time. And
Bethany 30:16
and I think that's what I needed because I mean, I had listened to a couple podcasts, especially I love the bold with insulin. Thank you and I read I listened to that, and I was like, Oh, that's such a good idea. But for some reason I never did it. I never. I still can't figure out why I'm like, oh, yeah, that totally makes sense. I never did anything about it. Like, I just needed someone to say, Just do it, you'll be okay, just do it, you probably
Scott Benner 30:44
didn't do it for the same reason that I did not ignore the chocolate chip cookies in my house yesterday that were leftover from Thanksgiving. Because I literally remember Sunday night saying to myself, and when you get up on Monday morning, let's have a cleanse, we'll run out and get a green juice, right. And we won't eat anything that we had for Thanksgiving. And that's how it'll go. And then instead, I did some vacuuming, I threw some laundry and I got hungry. And I was like, these cookies are right here. And I'm just gonna end up throwing them away. And then I four of them over the course. And so I do think that, you know, it's best intentions. It's also, you know, for you specifically, and I think diabetes related. It is did you I don't know if you've listened to resenting diabetes, or an earlier episode where, where a mom talks about having just gotten accustomed to her son's blood sugar being about 200. And then it just sort of seemed right all the sudden, like normal, like, you know, well, I, I tried to affect it, I couldn't. So maybe this is just how it is. And then some time passes, and it becomes it becomes every day to you. And then all of a sudden, it doesn't give you that feeling. But I loved what you said about the high threshold because I remember telling you to move the high threshold down on the Dexcom. Because again, like you know, the water in the basement, like when do you want to react? You want to react? You know, would you rather react at 150 or 200 or 250. Like once once you're up there, now you're fighting with the high. And you know, everybody who listens to the podcast knows that I think it's much, much easier to stop a low or falling blood sugar than it is to affect the high blood sugar. So So you actually helped. Okay, so the great success that you had with my overly simplistic advice, which of course we know, and now's a good time to say it is not advice, medical or otherwise. And you should always consult a doctor before making changes to your medical plan. But after I saw what great success you had, I was contacted by a mom just this past weekend, who she just sent me a note. And she was like, I don't know what to do about this. And you know, do you have any ideas and blah, blah, blah. And in the past, I would have like, emailed back a thought instead, I was like, maybe it's not creepy to ask people to call you. And so I was in the car, taking my dogs home from somewhere. And I was like, if you call me now, I think we could straighten this out, like 10 minutes. And so when I was speaking with her, it occurred to me to say it in a different way that now I wish I would have said to you, but you know, maybe it'll still be helpful in hindsight, or to somebody else listening never occurred to me to say it like this before. I think we always are on defense with diabetes. Like we wait to see what happens. And then we react to it. Did the food make me go high? I'll give myself more insulin. Am I getting low? I guess I'll have to have some carbs, you know, waiting to see what diabetes does to us and then trying to fix it. And I said to her, I'm like, You know what, instead of being on defense like that, I'm like, why don't you go on offense? Like, why don't you do something to diabetes and see how it reacts? You know, and it's overly simplistic advice. But as I was saying, I was like, I might be a genius. And to be because I think that's what I do. And I didn't even realize that's what I'm doing. Like I'm putting myself in the position to make a decision. And then I get to see the you know, I get to see what happens after that decisions made instead of having something happen and having no idea how I got to that place and then having to fight my way back to it again. And then you get back to a steady graph line. And you're only there for I mean, how long before somebody eats again, you know, the the freakin eating is constant breakfast lunch, dinner snack, you know, so So that's, that's my monitor for this week is like, you know, get on offense. Don't don't play defense with diabetes. Tell me how it's been going.
Bethany 34:47
Um, it's mean it was amazing to me how it flattened out, which was great. And then I think I got a little too
Scott Benner 34:59
little To ballsy,
Bethany 35:01
he kept, he was very straight, but a little too low. And so I adjusted his baselet. And it came up a little bit. So for a while I was on the lower end. And I think that's one of my, I have to watch that because I'm a very competitive person. And so for me, is a one C, I'm like, you're getting this lower. And I have to find that the good low and not always try to get lower. Because for me, like, oh, yeah, as low as I can get it, that's better. But I know at some point, it's not good for him to always be, you know, 6070. Yeah. All the time.
Scott Benner 35:39
Right. Right. And I would tell you, that you in here, I'm not I'm not tongue in cheek at all, you really should talk to your endo about what is what is too low, like I've settled my nurse practitioner, I have settled on the idea that Above 75 is, is okay. But under 75, we should start thinking that we should try to affect the blood sugar a little bit. And I and that's how that's how I've been doing it. And I genuinely think you should talk to your doctor about what they've done. Because you're talking about making, you know, having effects on your brain when your blood sugar is too low. And that's not something that I'm comfortable even, you know, talking about in any way, like I know what I'm talking about. Yeah, but but at the same time, once you get that a one C to a spot where you're like, wow, it's six, you know, like, how do people have a one sees a five and a half? I think the difference between six and five and a half? If if it's even necessary to have it at five and a half? I don't know. But I think the difference there is more about fluctuations than it is about your constant average blood sugar. You don't I mean, like I think, I think at that point, if your blood sugar averages, yes, it's six, it's around 120 or 125? I'd have to look for certain but but you know, I mean, sure. Would it be better if it was more like 95? It absolutely would be. But But I bet you can make that. I bet just taking out the fluctuations are better. So So you are now your your Pre-Bolus ng meals, how far out? Are you? Do you find yourself doing the Pre-Bolus is, if he's
Bethany 37:15
Oh are then made are cut off about 120. He's lower than 120. We do about 10 to 15 minutes. If he's above like 120 to 160 ish. Probably do it about 20 to 30. And if he's high, hasn't been too much of a problem a couple times he's gone high. If he's high, I'm talking over 250 We'll do it a good 30 minutes before to try to bring him down so that he's on his way down or low enough when he starts eating.
Scott Benner 37:52
That's not an issue anymore. Right? Yeah. Boy, that really did make me happy to hear you say that. That's fantastic. It really is fantastic. Because you were I I don't know how interesting it is to hear like somebody talked about this, but I'm looking at a side by side graph that you sent me four days after we spoke. And at at, I don't know, it looks like about one in the morning, his blood sugar's about 300 It takes till five or six to get back down under 100 Then you haven't good till 9am then it jumps to 330 and then it's then it only gets down to you know to 275 where it stays for an hours for hours till it drops all the way down to 50 and then back up to 275 and then down to 100 like it literally this would not even be a fun roller coaster. This almost looks like a family of giraffes living together. And so and then four days later you send me a graph where he's never lower than 60 or higher than 100 in in 24 hours just from Pre-Bolus seeing and thinking about the insulin a little differently
Bethany 38:58
right and it was so easy and I'm I still can't figure out why I didn't that before right i mean it's it has anything to do I just changed his ratios and his basil a little bit but oh my goodness that the stress that is gone now. I think I'm gonna live longer to it just I was I was in desperation when just spiking I felt at a loss and now I don't really worry about it as much anymore and I don't I don't feel the need to constantly re if he's high because I'm fairly confident in our levels you know for today but every day is different. Yeah,
Scott Benner 39:40
and it's going to change as you go forward. But now but now you have the confidence and the and the kind of the the knowledge to just change along with it. And you know, it's funny like Arden just had her her her endo appointment a couple of weeks ago now. And it even hit me while the nurse practitioner had her pumping her And because I don't download the pumps, she just kind of goes through it. And, and she's like, Oh, good, you know, your your Basal rates are higher now. You know, they're up from the last time I saw you three months ago. And definitely I'm telling you, I don't I mean, if you if you pin me down and said, When did you adjust Arden's Basal rates over the last three months? I don't know, like three months later, I have no idea. I can tell you that probably, I experienced high blood sugars for more than three days, I could see a pattern in it. And I was like, Well, I'm not letting this happen anymore. And I don't want to just, you know, I don't want to be bolusing for these all the time. So this must be a basil issue. And then I bumped it around a little bit. You know, we stop and look back over that, you know, there was a time that feels like not so long ago, that you know, Arden's basil needs were like eight units a day. And now they're more like 30. But I couldn't tell you when I made those adjustments, I just did them on the fly as things were going on. And so that seems like where you're at now.
Bethany 41:01
Yeah. And the other thing I remember that you said was after I after he ate, and I was having to give him all these Bolus corrections, take those corrections and add it to carb ratio, which totally makes sense. So that that I felt like was more concrete. I teach math. And so I like when things are black and white. So when he was first diagnosed, I was like, This is great. It's like a logic puzzle. And once I figure it out, I'll have all the answers, and then we'll be good to go.
Scott Benner 41:31
A year later, you're on Facebook, Someone, please help me. I can't even watch scandal.
Bethany 41:38
So that but that helps me it was more concrete, like, okay, if I'm having to do two corrections, then I need to take some of that and add it to my initial list when he's eating. And that made sense to me that, I mean, it's not like I'm totally guessing Oh, what is up just to hear, so
Scott Benner 41:57
I wish I wish you could be in the house where I'm like yelling across the room, another unit. I've kept my Kelly's, like, based on what I'm like that she needs another unit, I'm telling you. And so, I mean, the math of it is just almost gone at this point for me. You know, it really is I you know, I wish you could have saw me counting her carbs for her lunch today. When I was packing her lunch, I was just like 2537 votes probably around 70. And, you know, but But moreover, what I'm going to do at lunchtime is I'm going to use how much insulin yesterday took, you know, because she kind of takes not the same exact things, but it's usually about the same amount of carbs, and about the same mix of, you know, something snacky and something more tangible and fruit and you know, a vegetable like like this whole thing. It's going to be around 70 carbs, it's going to need about six and a half units for art now, please, you know, that's not for anybody else, you know, 70 carbs for you is way different than 70 carbs for somebody else. But I know for Arden that today her her insulin needs at lunch are going to be about six and a half units. And and that's not based on the carbs. It's based on what happened yesterday. It's based on my feeling, you know that that's sort of how it goes. And and once you can get into that space, you know, I think then then you're then you're really doing it. I mean, I haven't posted it yet. Actually, Bethany, you're probably one of my last interviews before Christmas. I have like eight or nine. Podcasts banked right. And so yeah, because because I have something I'm going to, I'm going to add something to the podcast I need time to do so I can't actually do the interviews while I'm doing it. But so I've been banking on them. And based on listeners, requests, I talked to Dr. Stephen ponder, who wrote a book called Sugar surfing. Yeah, I read it. Have you Okay? When I got on the on the podcast with him, I was like, hey, this doctor guy figured out what I've been doing for a long time. And I was like, Good for him. And then great for him too. And no joking. Like, it's it's just interesting that no one ever said it to me like that. And when he and I started talking, I was like, I was like, This is what I do. And he's like, this is what you do. And I was like, yeah. So, so now you've read that book. Now tell me this is interesting. What's the difference between you having read that book and talking to me? What what, what didn't happen for you when you read the book that happened when you were like, literally speaking with another human being?
Bethany 44:30
I think after I read the book, it all made sense to me. And I thought, This is what I'm going to do. At that point. Part of me was a little hesitant to totally rely on my Dexcom as I say, my Dexcom I feel like it's my Dexcom
Scott Benner 44:48
I call Arden's Endo, my my dad.
Bethany 44:53
It was not super accurate, and I couldn't really trust it. So When after I read the book, I felt like, I couldn't totally do that, because it was always so off. But there were a few things in the book, some suggestions on how to make it more accurate. And I started doing that. It was making sure his hands are actually washed, not just using alcohol, only calibrating when it's in range, and when it's straight across which I knew these things, and I was doing them for the part. Sometimes I'd be like, Well, I just need to calibrate it right now. So I'll just do it anyway. And when I started doing that, it was unbelievable. How much more helpful it was when it was accurate. Yeah. And that's after I read the book. I made those changes. And then I just guess I didn't quite have the confidence to do much, or I was just confused about Well, I see him going high between meals. But is that the Basal? Or is that the Bolus? Is that? No, which one? Do I need to change? So I think it was just that I didn't quite have I needed someone like an actual person to push me like, just try it and see what happens.
Scott Benner 46:11
Yeah, yeah, it really ends up being I think it's the one sentence that a doctor is not going to speak to, which is like golf, just, you know, roll the dice and doesn't work out. We'll change it, then. You know, and, and that really is that ends up being how people figure out this stuff, which is just, you know, this isn't working. I wonder what this will do? Well, that didn't work. I wonder what this will do? And you know, because and but it's such a big leap to make when you're scared. That every decision you make, because honestly, what's the fear? Right? I'm gonna kill Yeah, yeah. And, and so have you know, it's been a month or so have you come close to killing them? Oh, good for you. Because you're not going from two units to 20 units, you're going from two units to two and a half or three? And and here's the question I have for you that I think I don't know the answer to but I think I feel like I know how you're going to answer. Before we spoke. What did you consider a low blood sugar? And what do you consider a low blood sugar now? Well, the
Bethany 47:13
endo told me 80 Okay, so I just went with that. Um, and under 80, they said 15 grams of carbs. And I was doing that. But now, when he's in the 70s, I don't know my husband gets a little more panicky than me. But I 70 wildchild
Scott Benner 47:35
husband is panicked by 75 blood sugar into someone's growing up, go ahead.
Bethany 47:42
If he's in the seven, instead of giving him a switch would make him I up to 100. Right, we'll just do more of like a protein or a little milk, but not 15 grams. No, that was way too much at 70. And they said if he's under 80 Give him a juice box.
Scott Benner 48:01
He's isn't that such an odd now that you've now that you're thinking about it differently? Doesn't that almost snap to you as like, as like bad advice? Is, right? If you're if your blood sugar's five points away from being perfect drink 20 out or drink 20 carbs of fast acting sugar.
Bethany 48:19
Exactly. didn't make sense. So we're still sort of in that. Trial and error with Okay, so how, Oh, Hi, in this I sort of got from sugar surfing to is if, if you do five grams of carbs, like let's say milk, how high is that making you so that you can figure out? If I'm 10 below what I should be, I might need a half cup of milk. But if I'm five below, I might only need a quarter cup of milk.
Scott Benner 48:46
Yeah, the one thing that Dr. Ponder talked about a lot while we were talking that I was just not that I wasn't behind what he was saying almost completely but, but the one thing that really resonated with me because it's, it's really a big part of how I do things is just the concept of bumping the blood sugar, just nudging it not not sending it off in a direction. You know, and, and, and the other thing I talked about with him is, you know, I said look, if arting ever gets really high, you know, I tried to get her down as quickly as I can. And, and he was like, Yeah, I can't I you know, I completely agree. So, but that idea of, you know, just those low blood sugars, just bumping them nudging, like, you know, last last night. Artists blood sugar was, it was kind of tough after dinner. And by tough I just mean like I couldn't kind of budget from like the 151 60 range. And after having given her enough insulin three times to move it and it and it was just drifting down and I knew the pump site was okay. And you know, that kind of stuff, right? I was like, she's gonna get low after she goes to sleep like I know she isn't. So sure enough, she goes to bed and her blood sugar's like 95 and, you know, there's this moment in your head where you're like, this is such a win. 95 is great. Yeah, perfect and and but then the other voice is like you this isn't going to last, you know, so. So I sat down trying to get something accomplished. And, you know, then it was ad and then you know, is that diagonal down where it didn't really move that much the number but I was like, oh, it's not going to stop. And so finally, like, I think 70 I went upstairs and I, you know, it's so funny. She said the cutest thing. She has a little side table lamp, but it has. It has like a blue light in it. She hardly ever uses it. But she turns it on. And like it makes her fingernails glow and stuff like that. I think she gets a kick out of it sometimes. So I It's neat when I go in there sometimes because I can turn it on. It's not this bright light that wakes you up, but I can still see better. So I I turned it on. And I had tested her blood sugar. And just to double check on the CGM and I got the juicer ID and I put it near her mouth and I was like Arden, I need you to drink just, you know, half of this juice. And she's drinking it in their sleep. And I don't know what happened if she hadn't been asleep that long. And she kind of sort of woke up first, like a split second. And she said, the light tickles my eyes. And I was like, oh, that's adorable. And even she thought it was funny in her sleep. And she started giggling. And then I mentioned it to her this morning before you and I talked and she was like, I don't remember that. You're making that it was adorable. But But nevertheless, she drinks half the juice, which should have worked. In most situations, that would have been enough. But I just kept thinking like, there's all those little boluses to try to push that 160 earlier in the evening, they're coming back to roost now, like I know, they are like, her blood sugar wasn't moving because the food, you know, something she ate for dinner was sticking with her. And now it's gone. And this insulin still on the tail end of itself. Like I know, this is what this is. And so I tried really hard to wait. But then I ended up going back up having her finish the juice box, adjusting Basal rates, like stuff like that. And I did finally get it to kind of level out at like 95. But, but it was one of those situations where I think, you know, 70, diagonal down that wasn't kind of stopping. That's sometimes where people would pile on, like in a panic, you know, like, oh my god, more food, more more juice. And I'm just like, try a half of this. And if you have to stay at 65 for 10 minutes for me to know that this wasn't enough. It is much better than you eating the kitchen and ending up at 300. You know, because are you going to have the nerve, you know, if I were to give out and 50 carbs a food and you know, at that moment, I would need to Bolus for it. Like right then and there. Even though she's 65. If I gave her a 50 carbs, I'd probably Bolus like 40. And and I don't know that that's something a lot a leap a lot of people can make. And then that's where you end up high and low and high and low online. So well, Bethany, I don't know if you have anything else to say. Because if you do, I definitely want to hear but even though this is a little shorter than than most of the episodes go by a couple of minutes. This is exactly what I was hoping you would come on and talk about. I think it is going really well. And I know you have small children in the house, who you've probably locked in the closet. So you could do this podcast.
Bethany 53:13
No Grandma's here. We're good.
Scott Benner 53:14
Oh, cool. That's excellent. So you and I are not that far from each other. Right? You're in Virginia. Right? And I'm in New Jersey. And and we are now internet, friends and podcast friends. And so tell me, I will ask this at the end, right? How creepy did it seem to have someone say call me? And did you only do it because of desperation? Like in a different situation? Would you have been like I'm going to unfriend you now and blocked? Or is the internet changed so much that it didn't seem that odd to
Bethany 53:45
now it's a little creepy. It
Scott Benner 53:46
was creepy, right? No, actually,
Bethany 53:48
if I if I hadn't listened podcast and didn't know that you knew what you're talking about? I don't think I would have
Scott Benner 53:54
no of course not you would have been like oh my god
Bethany 53:59
is this person
Scott Benner 54:00
listen to in a world where someone tried to pick my wife up on Words with Friends based on an avatar was I would agree with you. And so and so that that really is kind of what I wanted to get to, which is what you didn't just randomly like, oh, there's a stranger who wants to talk to me on the phone like you had? Yeah, you had a basis in reality for what you were doing. And so,
Bethany 54:20
and a little desperation and desperation,
Scott Benner 54:23
desperation, just enough desperation and familiarity to go I'm gonna make a really bad decision right now.
Bethany 54:32
It was good. And everything is Oh, much better now.
Scott Benner 54:36
Well, because I can't and and probably don't have the time to even I did to talk to anybody and everybody who has this feeling. And not that I feel like I could fix everybody's issues. But But I just that's why I wanted you to come on and do this because if people find themselves in this situation and it seems reminiscent of what you're talking about. I hope that they can kind of use this as a proxy For a creepy phone call and, and maybe kind of find the nerve to be a little bolder with the insulin and try to Pre-Bolus a little out in the future because you said something. So it was innocuous in the beginning of the podcast, and I wanted to touch on it, but you were you were telling your story. But you said, I said, you know, how are you Pre-Bolus Now, and you said, Well, I was Pre-Bolus thing before, but what you meant by that was you were giving insulin, and then he was eating immediately, which of course is not I
Bethany 55:31
don't think they ever I don't think at the hospital, they ever told me differently. I don't they? That's what we did in the hospital, give him his shot. And then he would eat so I'd never really knew differently until I sort of did my own research and yes, looks things up on my own. I guess I'm
Scott Benner 55:49
really interested, I'm really interested to kind of imagine in my mind's eye now you going back to your next endo appointment, and not punching someone in the head and going, how come no one told me this. But but but at the same time, I'm interested to hear what you what you get back from them. Like when you say to them, Look, I trained? You know, I went from the 14 second Pre-Bolus that you indicated was important. And I went to 15 and 20 minutes? And can you see the difference? And why did you not tell me this?
Bethany 56:18
And I hope they they start telling people I met with a group of local type ones here a couple weeks ago. And it was unbelievable to me. How many people had never heard of a Dexcom or network on a pump years later, or there's so much stuff people are missing. And they're not, no one's telling them. So if you don't go out and look for it yourself, they're just sort of stuck in a rut, there was actually a family there, who was at the hospital with us, and we got educated with them. So that we saw them, we're talking how are things going, and they are still exactly where they were when we were in the hospital. They're still doing injections, they had never heard of a Dex calm, and they go to the same endo we do. And it's it's sad that it's all this technology and people don't know about it, because the windows aren't telling them. So unless you do the research yourself or hear it from someone else. You're just kind of stuck in a rut.
Scott Benner 57:19
It is a real identity, isn't it? You know, like, again, it's it's kind of? I don't know, I don't know, you know, one, one disease from the next. But you know, it's in my mind, I feel like it's akin to like having cancer and going home and getting worse and worse and coming back and seeing the doctor and the doctor being like, well, I don't know, this is what's happening. And then you come back together, you go, Hey, I was online, I read about this thing called I don't know, chemotherapy. Should I try that? And the doctors like, Oh, if you want to assure,
Bethany 57:46
you know, like, wait a years? Yeah,
Scott Benner 57:48
we don't really understand your cancer before we tried to get you know, to make your better. And it just, it's that kind of concept that it's so strange how diabetes is even among your health care professionals. You know, we talk about in the in the community all the time how we wish other people would see how serious it is. And then we it's possible that our doctors don't even see how serious it is because because they're like, oh, what's your a one sees nine you're doing your best? Like, like, you're like, Well, okay, like I get the psychological side of it, where you you don't want to put people in a tailspin panic. But what about somebody like you who was feeling that you talked about it, the immense pressure and the stress of these, you know, of these blood sugar's that you knew weren't, you know, what they should be or what they could be, but you didn't have the tools to get to it? And then you go back to the end? Oh, and then it was like, Don't worry, we're doing our best here. Yeah, you know, like, Well, it turns out, we're not even doing like, close to our best, you know, and, and that is really, like you said, it's sad to think that I didn't say anything all that special to you. You don't even like the difference between multiple 350 blood sugars a day and a blood sugar that doesn't go over 110 shouldn't be the simplistic stuff that I told you. You don't I mean, like, if that's the difference, it should be it should be something amazing and major and, you know, that should take a decade to learn not, not, hey, try giving your insulin 15 minutes more before before you eat and, you know, don't don't don't settle for high blood sugar and, and go ahead and you know, you know, lean on that Dexcom a little bit and, you know, help yourself from from getting away from falls and stuff like that. It should it should be it should. I mean, what I'm trying to say is I didn't say anything that mind shattering to you. You know what I mean? In that that sucks, it sucks that no one did that before but I'm really happy that you found out and that it's working so well for you and well and that you were a you know, willing to come on here and tell other people about it because I think I can write about this stuff on the blog as much as I want but i i definitely think there's something to hearing someone say it that. Yeah, I think the confidence is easier to take. And you you you pointed that out earlier by saying that you listen to me talk in an episode called bold with insulin. But it was just me talking like it was a talking head episode. It was just me talking. It wasn't another person on the other end saying, You know what, I try that network. So I think you are, you are now de facto creepy podcast lady for a lot of other people. Yeah, good. But I can be good for you. Bethany. Thank you so much for coming. I really appreciate it. I really want to wish you a little like continued luck with it. And until your husband you can relax. Yeah, I'll try. All right. Well, thanks so very much, Fred for doing this. And I appreciate you taking the time.
Bethany 1:00:49
Yep. Thank you. Have a great day.
Scott Benner 1:00:53
Thanks once again to insolate the makers of Omni pod for sponsoring this episode, please click on the link in the show notes to try a demo pod and support the Juicebox Podcast. If you're enjoying the show, please consider leaving a rating and a review on iTunes because it really does help. And let's say next week's episode is going to be Dr. Steven ponder. He is the author of sugar surfing. Find me on the the internet's at Ardens de and at Juicebox Podcast. For now. That's it. Thanks so much.
Try a free demo pod today!